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szxmum

What impact has Autism had on your life?

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Hi All

 

I feel like I am starting to live on this forum - I've been here just over two months and there a lot of you out there who have been around for a lot, lot longer :whistle:

 

So..... I am interested to know what impact a diagnosis of Autism had on your day-to-day lives, as the impact on ours has been profound; it has changed our lives in a big way,very, very quickly.

 

Prior to diagnosis: Dh and I both worked full-time, ds and dd attended mainstream secondary school

 

Diagnosis: Ds's dx came about through him initially presenting with severe mental health problems. Further investigation led to a dx of Asperger's Syndrome

 

Outcome: Ds dropped out of sixth form. He is currently receiving Incapacity in Youth Benefit and Disability Living Allowance (Middle rate care and Lower rate mobility). I have left full-time work and currently receive Carer's Allowance.

 

All I can say is Wow!!! I am still reeling. Are there any more like us out there or are we an unusual case?

 

How did your life change?

Edited by szxmum

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Our life started changing from the time our child went to nursery. Than once he moved to infant schools the problems got worse. Our son went to infant school part time the first week, than full time for the next two weeks. By which time the school said they could not cope with him so I had to reduce my working hours to 4 mornings a week and than go to school with him for 4 afternoons. It took about 26 eeks before we could eventually get him into school full time. First afternoons were increased by 10 minutes prior to the end of lunch. Than he attend for lunch time for several weeks than an hour before lunch and all afternoon until eventually after approximately after 26 weeks we got him into school full time.

 

His stress levels went up rapidly when he started infant school. Our knowledge about a special needs child started to grow. We learned the language of special needs and the communication problems with a school that thought our child was just naughty.

 

 

We went through the statmenting process and got given a statement, no problem. Our son had an excellente ducational psy and ASD support who use to tell the school what to do and take charge of the annual review. Without them we know our son would not of survived.

 

 

Eventually our child got excluded 2 days before leaving infant school, all because he was handled incorrectly. So we went to tribunnal for the school discriminating against our child. We won this and now his old school have changed.

 

 

Our child went to junior school and again problems started. It took three months to get him back into the classroom environment even though he knew everyone in his class. This junior school was fantastic, caring and had an open mind. They set up training so they could handle our son more positively when he was challenging and even invited us to the training and asked for our opinion (which I always give)

 

 

Eventually our child grew more confident and was able to take a more active role within his class and school. Every year September till December always proved a very difficult time. I experienced going on day trips with his school, have attended for all the plays and played a part in the play to support our son (when he could take part)

 

 

Than we had the transition to senior school. Now choosing a school proved to be very difficult as we could not find an LEA school which could stretch his academicly. So in the end we choose a private independent school. The LEA gave us a large state school and we thought here we go again. But the LEA agreed with us that the school they had allocated would not suit his ASD needs and have payed for a small private school.

 

 

So in September 09 our life has been put on hold. He started the senior school, got bullied and found it difficult to cope. Hw wanted to be expelled so decided to ignore all teachers and break the school rules. Hence he got his wish. Just recently hes just been excluded twice. One for taking his treasured BB gun into school and also for taking wooden meat skewers into school. On both occasions he did not mean harm.

 

So we are at the end of his first year at senior school and I am working out which days he needs to miss to reduced his stress levels. So sports day and speech day will be non attendence days.

 

Our first priority is our son and trying to communicate so incidents don't happen or are reduced. Its a case of being on a roller coaster without a stop button sometimes we are up or sometimes we are dowm but we can not see an end to this ride.

 

 

Childcare is another hugh problem, so we have an aupair who watches our son when he comes home from school. This allows him mother to work part time. But our son still wants his mum there.

 

Phone calls from school asking up to come in and collect him are also another problem. Good job I have a good boss.

 

 

Problems with finding suitable clothing that does not irritate him is also a major problem. So when we do find something he likes and is comforatable in we buy it in 3 sizes. Socks are a nightmare, we have to order seamless socks from America.

 

 

Trying to find hobbies and friends is also difficult.

 

Holidays are essential to given us a break but the holiday has to be a home from home experience.

 

Sleep problems and anxiety are a reoccuring item.

 

Social life is restricted and going to family weddings is also a no no.

 

 

But we have a lovely son at the end of the day and he would not be so funny without his ASD

 

And life could always be worse.

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It's hard to know as my son was dx when he was 7, so we don't really know any different. I think we would have had a lot easier time over the years - I certainly would have been able to give my NT son more attention. We would have been able to go out as a family, and I would have gone back to work many years ago, so we would have been better off.

 

Even though the boys are 19, 16 and 16 now, I still can't manage to work more than part-time - this year has involved lots of chasing and meetings. I am hoping that by next October things may calm down a bit, but that depends on how ds3 gets on at college (if he gets in).

 

On the plus side, I would not have done a lot of the things that have increased my confidence, and I would probably have been a lot more selfish.

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Well, I stopped work when he was nearly 4, because I had an uneasy feeling about things, and he was diagnosed with dyspraxia at 5, and AS and ADHD at 7. I was then his primary carer until he went to residential special school at 15.

 

So because I couldn't work it was extremely hard financially. It meant that we couldn't buy our own home until 2007, in our 40s. At one point we also had housing problems and faced being homeless within 6 months, but thankfully we managed to get a Housing Association house because of his medical points.

 

It affected my DH's career too. At one point he had to give up his proper teaching job as he faced investigations for taking off too much time because we had so many appointments and general difficulties when my son had a breakdown. As a result he had to do supply teaching for about 3 years.

 

However, now that my son is nearly 20 things have changed dramatically for us. I have been able to go back to work full-time, and through his supply work Jester ended up with his dream job as a head of department in a special school. We've finally bought a house, although at the age most of our contemporaries are coming to the end of their mortgages!

 

Bid :)

Edited by bid

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Pre-diagnosis - Went to a small primary school, was seen as eccentric and overly naive but generally accepted. Moved to mainstream secondary school (second biggest school in Kent) and withdrew completely, struggled with depression and anxiety since. Had counselling and anger management through most of secondary school, had breakdowns at 13,16 and 19. :unsure:

 

Post-diagnosis - So far diagnosis has been a positive thing, frustrating at times with lack of services but on the whole positive. There have been things explained that I used to put down to being rubbish/lazy etc and I'm a lot less hard on myself than I was. I have a lot more support and understanding from uni, which has helped massively this past academic year. Not to say that I don't try anymore, I still try really hard at things. I'm now married and living with my wife and 2 cats, a university student, things I never thought I was capable of :robbie: My next challenge will be to find a job and stick at it for more than 3 months, probably part-time to start off with and go from there.

Edited by ScienceGeek

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I had concerns about my son from around 3+, but the Health Visitor and GP did not pick up on some classic signs eg. echolalia and other language and social difficulties.

I had taken an Access course and was 18 months into a University Degree when things went downhill in school. I failed a placement as part of my course. Nothing to do with my son, it was my fault. However the fact that whilst on placement he had to go to breakfast club, school then after school club proved catastrophic for him.

So as the assessments started I dropped out of university and have never returned. I do have other health issues so have remained on Incapacity Benefit and DLA. My husband suffered with stress and anxiety and was off work for over 6 months. He changed his managerial job for a part time school cook. So we survive on one part time wage. We have totally changed everything we do and all our aims.

Also the time it takes to get a diagnosis, then Statement and a different school etc have taken from 4.5 years old to 8 years old. Only now do I feel that I don't have to be on the case 24/7.

So, unfortunately I think all our stories are very similar in this respect. There are not many that manage to remain in full time work. Some of that I feel is down to a whole different prospective on life post diagnosis.

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Hi szxmum

 

Wow reading your messages is like living my story again. My dd (16) was only dxed last September and whilst it was a relief, it has also been a bit of a nightmare. We originally lived down south and when she was 8 the school noticed some problems with her - lack of eye contact, didn't work well in groups, handwriting problems, no eye hand co-ordination - her IQ was tested and came out above average but then her SATs were so low they felt something was wrong but didn't know what. We were recommended to see a specialist and she was diagnosed with NDD (neuro develelopmental delay) and started a 12 month exercise prorgramme which helped her co-ordination problems (all this was done privately) as we couldn't get the help we needed. When she was 9 we moved to Derbyshire and this is where all the problems started. We put her into a small independant school as we knew that she can't cope with change and felt a small school environment would help her. I used to get constant calls from school that she was not behaving (not being rude but refusing to take her coat off or going to the toilets to hide). We then decided to get an educational psychologists assessment and were told she had a visual memory and visual attention problem. After this we managed to get through primary school.

 

Unfortunately all her problems started at secondary. She went to a school for year 7 and 8 and during those years life was very dificult. Constant refusal to go to school, crying at the gate and refusing to go in and always in a state of high anxiety (now I know why), falling out with friends. I kept getting calls again from school about her behaviour (again more refusals to co-operate) and she was constantly dragged out of class and put in isolation as they kept saying they didn't have the time to deal with her. I repeatedly asked for an assessment as I had a gut feeling and in the end saw the educational psychologist associated with the school, who spend her time lecturing me about having sent her to an independent school and who in the end told me that my child was an indulged child and needed to have firmer structures put in place. We did tell her that dd thrived under structure and we were quite structured at home. I went to the doctor and got a referral to CAMHS at this time but dd was refusing to co-operate and used to sit there mute. At the end of year 8 we felt this was not the school for her and she asked if she could go to the school where she knew some people from her previous school, so we elected to go the independent route. She lasted there for 2 terms!! We had sat down with the school and gavae them all the reports we had and stated that she was at Camhs at the moment but she did have a learning difficult and we were assured they would help. As she struggled academically not giving her homework in we were then told that they felt that this was not the school for her and we were asked to leave after she had fallen out with friends. Camhs at this time also said that there was nothing wrong with her.

 

We then had problems getting her back into the school system. It seems that if you take them out to educate privately, they are not keen to help you and take you back. We were given another school, reports were furnished, met with education welfare and again we have problems. She just could not integrate. She was bullied and in the end we had to call the police as she received threatening text messages so as she was too scared to go back to school we pulled her out. We finally found a school that took her in and they wanted to help, but by this time it was her fourth school and her anxiety leves were through the roof. Constant being sick, headaches, tummy aches etc.

 

By this time we were really frusstrated as we knew deep down something was not right. I went back to the doctor and asked to see a someone privately and we saw the psychicatrist over a year and he diagnosed AS last September. As he also works for CAMHS (although Derby City opposed to South Derbyshire) his dx had to be recognised by the authorities. He also spoke to the CAMHS unit that we come under and we have had some really great support now. Unfortunately my dh does not accept that she has a problem and refuses to see CAMHS although dh and I go to see the psychiatrist and she is really helpful.

 

DD has not been in school since September, missed her GSCE's and I am constantly worried about her future. She has become more reclusive by the day, we can't get her out of the house and she has no interest in thinking about work. My dd and I both have to work and she is at home most of the day by herself with the dog for company. Whilst I am lucky that I am able to work from home once a week, she seems to love her own company. I also get frequent calls at work when she gets a panic aattack and luckily I have good employers and am able to go straight home (it is less than 10 minutes away). She does get depressed but it never seems to last for long as she then just plugs herself into her ipod and starts dancing. I know that she would like to go out but it seems when she actually gets the opportunity to go and and see people she makes plans and then cancels them at the last minute. She lives on her ipod and computer. The strange thing is that she loves to dress up and put on her make up as if she is about to go out, then bottles it at the last minute. Her meltdowns are really bad and whilst I know the right thing is to walk away until she has calmed down, I sometimes just can't help myself and shout back and get so frustrated with her tunnel vision.

 

The psychiatrist has prescribed Fluroxotene (sp) and it does seem to be calming her down abit. She is definitely more talkative and is now actually talking about doing a hairdressing apprenticeship, whether she does or not I don't know but she is actually talking about it. She doesn't seem capable of looking after herself at the moment or making the journey into Derby or Nottingham, but I am hoping that in a year or so she may have matured a little more.

 

It has been really tough especially the last 12 months and there have been times when I don't feel that I have been able to cope. This board is a saviour in reading that other people are in the samae situation. The last few months I have felt really down and have been a frequent visitor to the doctor, but now am back on track although there are times when I feel so guilty knowing how school must have been hell for her and making her go through the gates and remembering the tears and her begging me that she didn't want to go in.

 

We also get the middle rate DLA and the lower rate travel.

 

Whew - what a lot ofo my chest - I am so sorry if this is long and rambling, but your story is so similar and all the posts that you have put on is liking mirroring the ones that I would like to post.

 

Lisa x

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Blimey, this got me thinking. We've lived with autism for so long now its hard to imagine life being any different. But a few thoughts:

 

Like others, work has been affected. Stayed part time when I would normally have gone full time when JP reached high school age, as I simply didn't have the stamina to work full time & give him the input he needed, attend meetings etc. Still part time, just as he got more independent my mum needed more help :rolleyes: So I guess, long term effects on career prospects/pension.

 

My marriage took a battering but we were lucky & emerged stronger for the experience. I know an awful lot of autistic families who end up splitting up over the pressure. It could easily have been us. Long term, we feel a bit "burnt out", I think. It would have made life much easier had we had more practical support from our wider family, but frankly very few people wanted to know. Again, this has affected family relationships. We haven't fallen out with anyone but it was an eye-opener that so little concern was shown & I feel pretty cynical about some family members.

 

I worry about JP's future. He's doing very well but it feels fragile. I worry about how he will cope when we are no longer around. I wonder should I make specialist provision for him, but he's doing so well I don't want to limit his future options either. I worry that his sister will end up taking on my role. I worry that she won't. I worry he'll be exploited.

 

Ok, positives! We have a fantastic young man who is a pleasure to be around & in many ways (not all) is easier to have around than an NT young person of the same age might be. He never gets drunk, smokes, takes drugs, drives too fast or brings home unsuitable girls! :lol: We have a pretty good relationship with him when many of my friends are despairing over the attitude of their NT lads. He is very caring, pays his way & does his share around the house. When we get old, we are pretty sure that he'll be there for us - he watches how we look after his Nana & takes it all in (and helps with her, too.)

 

Finally - its been, & continues to be, such an adventure! We have learned so much about ourselves, become so much more tolerant & welcoming of difference, & explored areas we would never have otherwise. I've been privileged to meet & make friends with people I'd never have met otherwise. And I count some adult aspies among my closest friends. They give me hope for JP's future.

 

I'm filling up here :wub:

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steven was diagnosed at about 10 with aspergers,i knew something wasent right for long time but hard getting a dx

my relationship with nick has really suffered but saying that it has also made us really strong because i know we can cope with everything life throws at us

the things i have missed most are family holidays and days out,i still get a bit envious when i see families out together cos we cant go out as a family cos its too horrendous!saying that though its made me and katie extremely close as shes had so much time with me on our own

def made me a stronger person,got to fight for everything and its made me more confident,i was very timid before i had steve(shut up bighead!!)but i liker the new version of me cos i have more of a laugh now.

i think its made me more tolerant of other people,before i was one of the ones who thought children playing up in the shops were naughty and there mums couldnt control them,now i know theres more to it than that and things are not what they seem sometimes

 

but the very best positive about having steven is getting to know baddad :wub::wub::wub::lol: cos if steve didnt have aspergers i wouldnt have been on this forum and met the most fantastic,good looking man in the universe :clap::band::band::band::groupwave::groupwave::groupwave::groupwave::groupwave:

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its hard to put the finger on the impact,obviously there is a challenge,but what i have found important,is to take each day as ot comes and have a sense of humour,despite the public meltdowns and the difficulites with school whatever, he is a human being with various obcessions and demands :wub:

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where do i begin at the beginning there's so much to know and tell! well in juniors school i was misunderstood labelled as negative terms -bad naughty lazy stupid etc get sent out millions and asked to 'behave' sensibly maturely next time around i was socially excluded isolated alone scared afraid quiet timid vulnerable little girl the comfort i couldn't seek from teachers who judged stereotyped i took from 2 guardian angels- both called lorraine weirdly enough! i couldn't relate to my peers reach out as they didn't reach out to me i know 'real friends' peer group hang round with that you have in childhood to play with go parties round houses children who thought my friends believed trusted on their words hurt me let me down broke me many ways mostly though false facts and being bullied and thinking i deserved it for not sticking up for myself being weak being vlunerable i shut off and down from everyone around me yet acted up in class easily distracted! i was seen as class clown joker when i was hurting deep down inside no-one could see what going on there though oh no!

 

teachers turned 'a blind eye' to everything going on they couldn't be asked or bothered to help and support me in way should have been! especially my SENCO put my health and well being at risk several times lucky my mum made this clear it wasn't acceptable sit back and let it happen to do something keep a closer eye on me! i wondered and questioned why they didn't help me more! you could say time resources etc but excuses can always be made for education system and back then it was failing miserably with any SEN kids. my parents especially my mum battled fighted all way through for try get 'any outcome' possible i have very little input from services outside and feel unwilling to make an effort to make me progress into anything further than they had to! like OT's ,STEPS etc

 

at 6-7 years old finally officially diagnosed with dyspraxia thanks to mum's reseacrhed information she written down and looked up too and asked advice from SCUBBU nurse as her neice suffered with it so she recognised the signs there that mum mentioned to her in coversation and told me get checked out referred to peactrician and SENCO from school also involved she just called my mum 'over protective' mother and she 'made it up' the official diagnosis for sake of sticking of label! when oviously i was clumsy forgetful showing all classic signs staring them in face literally! i found PE such a struggle etc peadtrician said he didn't think i had anything there a few signs my mum had long list nearly all signs i filled up and ticked successfully so how can say that! finally after proving my showing my signs too many times he willing to yes i did have it! even though SENCO still saying my mum 'pushy mother' ! makes me so angry bitter to know my mum did more than they ever willing to do! to step up when needed it!

 

then years later at 14 years old still felt dyspraxia didn't 'fit' explain the 'whole thing' i wasn't going out (socialising) ,anxious,panicerky,depressed,furstrated etc so then GP suggested referring me for counselling sessions in which general counsellor picked up on 'something else' there mum agreed on her decision and she said needed investigating further but she wasn't able to do that side of it! so then up to complex difficulties clinic part of CAMHS clinical pyschlogist and LD nurse assessed me and really knew straight away it was AS there too so that explains the rest! so that fits in wher dyspraxia didn't share some and overlaps some signs also related conditions later discovered! i grateful for counsellor she saved my life -suicide etc if found 'real me' real answers slotted in jigsaw though some never be found i know that now too hard to do!

 

normally one found before other not both together though can happen if spotted early enough and know what looking for then great found quicker!

 

i hope someday i can thank 'my past angels' properly' would mean alot say what they done for me to me! hope get chance and opportunity to!

 

i owe my family so much being there-understanding supportive by my side all time thye've been great!-i'm lucky to have them at least!

 

past 'catches up with me' i'm very insecure,paranoid have low trust levels,low self esteem/confidence which i know isn't helped by both conditions i have anways doesn't help with people's broken promises let downs disappointments alot time it annoys and upsets me furstrates me! lack control over me due to past events that been through! systems i missed!

 

i have MH probs anxiety-panic attacks ,depression-self harm ,suicidal urges/voices take meds on and off since 14 years old prozac not mirtazapine have been on anti-pyschotic risperdal for anger,agression,violent outbursts /meltdowns so i know i affected my AS dyspraxia everyday in one way or another by next task and challenge it brings along with it!

 

 

XKLX

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N was dx with Aspegers when she was 6. She had obvious physical probs since she was a year old, but her behavioural and social probs didn't become apparent until she was in her last two terms of pre-school. She moved to Infant school and her behaviour (mainly at school) got a lot worse but most of this was put down to her being naughty by her teacher. Luckily her paed was excellent and when me and my husband raised the poss of ASD he got in touch with the diagnostic team and a few months later she was dx. Statement followed soon after, plus we also got DLA - originally High Level for both, now High Level care and Low Level for mobility. Sadly, the damage was done and she now hated school and got really anxious and upset when there unless she was with her one-to-one LSA (who was fab with her) and away from the other children.

When she was due to transfer to our local Junior school we decided enough was enough and got her a place at a local Special School. She did keep links with the junior school for the first two years and had taster sessions there but she just got anxious there and badly behaved at her special school so she is now permanently at the special school until she goes to college. She still doen't love school but she is so much happier and settled there.

As for me, I work part-time in Ns old pre-school (a job I originally got as I had to help there for some sessions when N went due to her mobilty probs). I would love to train as a primary school teacher, or a teaching assistant, but I don't drive and would have to be back in time when N gets home from school so this is on hold for a few years yet!

 

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Autism has had a big impact on our lives or maybe meeting DH was the biggest impact you decide after reading. Before diagnosis i was a single parent bringing up Marcus with the help of my mum. i had my own house and a full time job we holidayed abroad on package deals at this time i didn,t know DS1 was autistic. After a chance meeting with someone on holiday who worked with ASD kids, who asked me if my son was autistic (bolt out of the blue I can tell you) the diagnostic process began. I had a good job worked 08.30 to 17.00 everyday but had every weekend off so spent this time with Marcus. Just before he was diagnosed i met Miles and after an argument with my mum in which she cut me off, moved in with him, she continued to have Marcus the odd weekend so we had some respite. Marcus started school and after this DX came quickly. We had a series of childminders who couldn,t cope with Marcus behaviour and after the 3rd one let us down i decided to leave my comfy job and sarted working nights on less hours as a nurse. After 6 months i went back to midwifery but still on permanent nights. I would work all night and then do the school run go to bed for 4 hours and then get up to get m from school. I was and still am constantly shattered.

When M was 8 the twins were born and after struggling to cope on little sleep and the demands of 3 children I went of sick with postnatal depression. I returned to work but was still struggling to cope so after much discussion with my manager they agreed to give me a term time contract and recently i have reduced my hours still further. WE now have less money with more children but the positive side to this is i now get to spend most of my time with the children I am available for all their hospital/school appointments and know all the mums and kids in their class. Since DS2 has been diagnosed i will possibly reduce my hours still further.

I suppose the biggest change for me is that before I was very career orientated and very focused on my job. Now i still love my job but their are far more important things in my life now and i am determined to enjoy my children and do my best for them no matter what that brings. At times i feel like I am not pulling my weight at work (I have been told my colleagues don,t feel this) and feel quilty for my special working arrangements. Some colleagues have openly criticised the fact that i don,t work late shifts in the week but I just suggest they would like to swap lives for a week and that shuts them up. I have always been honest with work about how tough things can be at home and i think they respect me for this but it is hard to ring up for yet another carers day because your 13 year old has had a meltdown at school and is now in a panic or your 5 year old has just swallowed tea tree oil again.

On the whole life isn,t bad just different I now have the support of my DH, and my children i hope feel I am always there for them. I now speak to my mother but we still have a very volatile relationship and probably always will, we have very little family support but our local support group are great as is my best friend and continue to give unconditional support. The other positive is i now have many friends that i have met through support groups and they conitinue to be a very important part of my life as is this and the other forums i live on.

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Huge impact - out of the workplace for nine years but a huge plus has been having four children as the cost of childcare never came into it. Could have had a 'better' life but realised money couldn't buy what DS needed most - his mum.

 

Finances were particularly stretched sometimes but it's amazing what you can do without. Having discovered you can make £400+ selling cakes that cost £40 to make I don't think we'll ever starve again - farmers markets and festivals here we come.

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before my diagnosis I felt like a monster.like something was really wrong with me.

I got my diagnosis around my 12th birthday due to my little brothers previous diagnosis raising superstitions.

my teenage years have frankly been utter hell....

in my first year at secondary school I was bullied mercilessly for my looks and devolped a borderline eating disorder.

I lost my friends in high school,started trying to strangle myself among other things before ending up in a psychiatric ward for teens ages away from my family in London...I'm Scottish so you can imagine how insane a situation it was.The nurses didnt believe my diagnosis as I was'nt a rain man stereotype and I was left to my own devices.I come home and was in one here too.

through it all i saw things that have scared me to this day and things that have made me realise the fragility yet beauty of the human spirit.

the thing in the end which has frankly saved my life is music.my favourite bands most noticeably joy division helped me realise that i need to do something musical with my life.After hospital I went through two years of purgatory.i avoided going to school and my ability to cope with school and life outside my door deteriorated.There were a few people who helped me through this terrible period such a friends I gained through myspace such as a friend called emma whose become a bff practically!

i just finished my standard grade exams and left school for college to do my highers..

for the first time in my life things are looking up.

I have real friends,regularly go to aspie social groups/befriender things,i'm going to college to do what I want and i'm learning instruments.

I believe my real life has finally begun...

i think although being an aspie teen is terrible you can get through it.

I've wrote a short story about my experiences in hospital:http://dancedancetotheradio.deviantart.com/art/Eyes-wide-shut-98060482

 

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My son had problems from birth as he was born with a hare lip. He was a fantastic baby, too good for his own good. He would concentrate on single object for long period of time, hardly ever cried, always in the same mood (same now). He went to nursery aged 14 months and trouble started. He was always keen to befriend others but did not know how.

He started primary school, fluent reader but the school did not know what to do with him and told me he was arrogant, over confident and using others. He had no friends. Accidents were frequent and so was bullying (him being bullied). By end of year 2 he was suicidal, had developed OCD.

In retrospect signs were everywhere, in the way he walks, talks, laughs but we could not see it as we were looking at individual behaviour rather then looking at the whole person. I went several times to GP who kept saying that he was ok, doing well at school, what else do you want?

Then head at school changed to a wonderful man and he listened to our concerns and put things in place such as counselling and life got immediately better. Then got him diagnosed and we are now getting more help.

I used to have a good job but I know my son would not cope if he had to go to daycare or after school care on a regular basis. Also when he was little we had to go to lots of appointments which made me a nightmare employee. I am now self-employed and work evenings and week-ends so that he is only cared by us. At times I cannot concentrate on what I am doing so I have lost some clients. My marriage is very wobbly as it creates a lot of resentment. My daughter suffers from my son's differences and suffers from getting less attention. We have very few parents friends at school, I hate having to go to school as I do not speak to anyone. I worry all the time to the extend that at times I need to take antidepressant. We have been bullied repeatedly by children in our street (damaging the house). Life feels restricted at times. My family does not understand, so that is lonely as well.

On the plus side, he is very independent and very personable, he does well at school, he is an excellent swimmer and he plays music, he likes to take a bit of risk, he is funny and full of knowledge. He knows what he wants and I am hopeful that with the right support he will fulfill his potential.

Along the way, I have met some wonderful supportive people and others who have preachy and narrow-minded. I have no regret about having my son, and I would not swap him for any NT child.

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It is hard to separate out what impact my sons autumn had from the onset of my wife's disability whilst expecting him.

I know that life has turned out nothing like we expected it to.

The plan was that my wife would go back to work full time and I would continue to work part time looking after the 3 kids.

As it worked out we lived on income support for the first 2 years of his life.

My son had developmental problems and did not like to mix with other children (Older two where/are like this) and had problems with school (School and preschool were very supportive) it was not until he was 7 that a diagnosis for ASD was made. It was not something that we had considered (In them days I know nothing about ASD).

 

Any way when he was 2, I become a childminder so I could look after son and wife and earn some sort of living, thank god for Tax Credits.

 

Gave that up a year ago as my son, now 9, was getting more and more unhappy with the idea of having children in the house that he didn't like. I only ever minder very young children and babies.

Now I work nights so I can be around to take son to school and pick him up Just changed jobs so I can be around till past his bedtime.

 

I now work 10pm to 7 am 4 night a week at a home for adult some of whom have autism.

 

If things had gone to plan I would now be working on building sites as a electrician.

 

Life has not been to bad, from a financial point of view, we now are better of that we have ever been, Compared to the rest of the family we are the poor relatives and it is only 10 years till I retire with no pension in place which is a bit of a worry.

I am determined that my son will be able to live independently having seen what life has in store if not.(Work)

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before diagnosis, I knew somethin wasnt quite right, he just wasnt like my older children, cheeky one got dx at 6& a half,

Diagnosis was brill because I understand him better now after researchin and talkin to people on here, also he got full statement in a specialist independent school which was a god send coz he had been out of school for a yr before that as school couldnt cope.

 

Family life just as difficult as before, cant do much socially or as a family, we have had to learn to kerb time so that when we are out he knows it wont be for long.

The older two find it hard as they dont always get the attention they need until cheeky one is asleep.

 

Thinkin about it, it has changed our lives hugely, but you just kind of get on with it and except it, apart from the odd day when a good grizzle does me good.

 

Sarah

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I just wanted to say a huge thank you to everyone who has posted on this thread >:D<<'> I have enjoyed (seems the wrong word, maybe appreciated is better) reading all your experiences.

 

Thanks,

Szxmum

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Oh how to condense this down...

 

Before dx I was always unsure of myself, always aware that there was 'something'and I felt like some sort of alien. There seemed to be a never ending stream of questions as to why certain things were how they were, why certain things were difficult or impossible etc. Why could other people do things whereas I couldn't?

 

After the dx my world did come crashing down but, having had time to take the situation onboard I now feel as though I have more confidence and I;m actually a lot better off. I know what I am, what I'm capable of and that there's a reason as to why some things are just never going to be possible. I no longer beat myself through frustration about being 'different' and not being able to do certain things as I now know why I'm different and why certain things are beyond me. I know why certain sounds, sights and smells upset me. It's not exactly given me a purpose in life (as things seem to be far less 'clear cut' externally than before - where am I going? How will I get there? Will there be barriers along the way?) but it has brought a sense of stability within myself - I'm more settled, more comfortable and feel almost a sense of 'belonging'. Yes I am different...but I know why that is and I know that I'm not alone.

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Hello,

 

Positives: more help and understanding for my son, my interest in ASD has led to new job, made new friends amongst network of ASD parents.

 

Negatives: husband's mental health suffered, time taken off work for multi agency meetings, social services involved at one point, other son developed behavioural problems.

 

S

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My son was always hyperactive as a child (according to my family) - I had no idea. I was an only child with little experien.ce of children. My little bundle of joy passed all his milestones. He spoke very early -knew all his colours and letters by 2 years old. To me he was no different from any other child.

 

He joined preschool - they didn't mention any problems (apart from the time at Christmas - he emptied the Christmas post box and put the christmas cards in the nappy bin!!!!)

 

R joined mainstream reception. No problems-except that he would not write. His reading age was that of an 7 year old. He went into Year 1 - his teacher was the SENCO. She called me in within 3weeks. He thought he had dyspraxia and "very poor social skillls" - I had no ideal that R was different from anyone else - until then.

 

In year 2 got a dx of ADHD and HFA and Dxyspraxia. R went on Equasysm - very successfuly - for about a year. Then tried him on Concerta. It was HORRENDOUS. My darling son had tics that you would not believe. Crying his head of because he could not stop shouting his head off!!! Stopped those meds and tried Strattera, and thats where we are now.

 

Strattera is causing so many many problems.My son is not coping at school. Refusing to do work. Lashing out at chairs , computers - your name it, I have spoken to his paed today and I am going to take him off his meds on Monday. I am seeing the clinical pchsc tomorrow.

 

I really dont know what to do, because my son is on the gifted and talented register at school, but if they cant cope with his behaviour? What choice do I have but to send him to a special school???

 

 

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Have two both with different problems. Life is very different to what I imagined but don't think I would swop it. My life has colour! My son is a handful but never boring. I love his quirky hyperactive personality= who couldnt! My daughter can be a handful but a bright light in any darkened room.I had a great career but who cares I have two great kids! I know no different. My career has been very different to what I wanted but as I have had to be more flexible I have met some interesting people.

 

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I really dont know what to do, because my son is on the gifted and talented register at school, but if they cant cope with his behaviour? What choice do I have but to send him to a special school???

 

If your son has a Statement, (which he would need to go to a special school), he could go to a specialist school which can cope with adhd/as/behaviour but still has a mainstream level curriculum. There is even one specialist school that specialises in challenging children who have above average intelligence.

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I always felt like it was just me, like i was imagining things, as no one else saw what i did, with my dd, she was 10 wk prem, by about 9 months i could see she wasnt comfortable with being around people, she only ever giggled once , as she got to 18 months i just had a gut feeling something wasnt right but had no idea what, she visited her nan's every week and she would just glare at her grandad as if he didnt exsist and if to say stay away from me, she played differently with toys to what i was use to with my eldest dd and other children i minded over the yrs proir, when out she never gave eye contact , you always get it with shop assistants they say hi to the kids or ask" is this toy for you " but she never once looked smiled or anything so i just said oh she's shy which is excepted, i couldnt ever take her out to the park if there was other children about, or for picnics she would not go and play ever she would just sit and stare like she was in her own world, family days out werent worth it she had no interest in doing anything except sitting in her pushchair, by age 4 having been into a special playgroup for disabiled children but staff put it down to seperation anxiety and as they were nearly shut down their focus wasnt on the children i would take dd and after months of going there, every day was like a new first day to her, if her keyworker didnt assist in encouraging her to play she would sit at my feet the entire session, by this time i felt this wasnt helping and decided to put her into mainstream nursery, but although she went her nan had to take her and she would not partake and would not talk, and refused to use the toilet there so from 9 am til 12 would hold on to it, i tried telling anyone who i thought would listen but it was always 'oh children are like that' and yes they are but along side 20 other things at the same time everyday? .

Her dad and i then split but it was an ok split, we decided we wasnt going anywhere, he was quiet and i mothered him as he was incapable of making any decisions and i felt after 6 yrs he was still unable to have a conversation with me at all, he would not talk unless i did i had to ask questions and prompt him or it was silence, if i asked could he do something he never understood, ask for some socks for dd and he forgot by time he was up stairs asking if they were for me,!!! in the middle of summer knowing i hate socks and dont own a pair! (looking back now i can see his own aspergers tendencies)

 

i then met someone and was big change his 4 kids and me mine al moved together, his children didnt understand dd, one instance the gerbil cage fell upside down we heard the thud and instead of " oh mummy quick" there was no realization from her that it wasnt good so she just stood there saying wasnt me , when asked what noise was, or when they was out running around, not quick mummy they escaped but very calmly, oh you rascal,

 

she never talked to anyone and i always felt she was cutting her own nose off if she'd said hi and bye to partners mum dad they'd taken her out for great days out but she had to stay with me, She was 4 1/2 still in nappies which along with all the other misunderstanding about her caused alot of stresses, my partner and i married soon after, but having dd around all the time was a strain, going to her nan's helped me but she over indulged the behaviour meaning i had to undo and redo alot of behaviors, i was emotionally drained but this time i felt trapped unable to understand why she wasnt using the toilet why she wouldnt talk why when fun was on offer she would refuse to go, by 5 1/2 due to her not being in school as they wouldnt take her in nappies i went for an assesment, about 2 weeks prior i put a post up about her behaviour and was pointed to aspergers, finally it al made sense, even her dad thought so and he'd thought he had social phobia thought he himself was suffering the same condition. i said nothing to the paed but she asked alot of questions and saw where she was goingg with it, the assesment came and went, i was 29 wks preg 2 wk before xmas 4 days in special unit them thinking give her a sticker she'll use the loo to come home with nothing it was home life thats all,

 

my whole life with her has felt like an up hill struggle, never knowing whats next will today be a good day, my ds now 1 1/2 and i see the difference, he is a joy to be around where she was a stress to be near,

 

Last sept my husband was murdered, her reaction was simple matter of fact , i think i might cry now, and said to my son aged 7 months your dad's dead, its been a tramatic ride but dealling with her was hardest but she began having nightmares and terrors so went to the docs for help who refererd us to pead who said she was on the wall as to aspergers so was sent to family guidence place which , dd behaved normal for her which helped, and the specialist said aspergers! when i recieved the letter it stated high functioning autism and aspergers and selective mutism.

 

just waiting follow up appoint to see where we go from here,

i just feel my life is restricted by her, going out places to friends is really hard, then the mental and emotional strain sometimes i just give up talking to her and want to bang my head on a wall i'm exhausted, But the hardest is that no one else gets it, i say how bad things been and they try saying but she good at this now, her dad had her for 4 hours brought her home and was exhausted! try 24 7. i have to manage her and life to suit her on my own i try to explain to others what her needs are but they dont listen, i dont feel like her mum i just feel like she is my job i am her carer as so much has to be done evryday and still new things turn up i never know what mood she will be in each day when i meet her in the playground is it mutism, crying yet she has no idea y ,or trying to tell me things but in a very confusin fashion,

It's tiring and with no one to take any of the load off my shoulders i wonder what the future holds, will she ever be ok to walk to school alone, will she suffer more mental health isssues its a life long thing i hope she has a great future and works with whats she is high functioning at, her future is in my hands for me to make sure she gets the best and the right support to help her grow into an adult who can get by in the world, her dad at his new job, i was told he hangs his head low and doesnt talk everyone tried to talk to him but have no idea how to, He also has now mentioned selective mutism when he was at school.................

 

tired and feel guilty that i get more from my ds, i feel sorry that she can not enjoy life the way he does by running up to people getting cuddles, etc

 

wow sorry that was a waffle! but no one gets it sometimes i just need to off load how hard emotionally it is caring for a child like her,

and if you made it to the end and read all way though wow but yep needed to vent..................................

Edited by vondahue

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I'm so sorry for your loss, Vondahue. I admit to marvelling at how much easier life is for (and often with) my youngest, NT son and have had the same feelings of guilt about enjoying that experience. I also feel terrible guilt that my elder son often expresses his opinion that I'm not as tough on the littley as I am on him. Trouble is, he just can't see how his behaviours affect people until much later when he's calmed down........and his little brother just doesn't behave in a way that needs intervention (well, not as often as the older one does, at any rate.... no angels in this house, more's the pity!! :) )

My eldest's early years were a fraught time. I had a terribly polite, knowledgeable, if slightly aloof/introverted son until he was 3-ish, then everything rapidly changed and I was frantic with worry, fear, stress, guilt and a whole host of other negative emotions about our situation. I had already asked for help, as I knew my son was different to his peers, but I was not listened to. I try not to be bitter about that but can't help it sticking in my throat somewhat.

My sons' behaviours grew steadily worse until I couldn't leave him anywhere, I had to leave my job and abandon my thoughts of teacher training because I couldn't ask anyone else to care for him. I didn't know what was wrong and boy, did we struggle.

I actually look back on that period and it wasn't good at all. I'm not at all proud of it, but I was resentful of the fact that everyone else seemed to have 'normal' children, went through the whole 'Why HIM? Why ME? Why US???' stuff, I don't think I handled the situation well at all at times and I was utterly torn apart by the emotional angst of having to handle such bewildering, relentless, difficult and often embarrassing behaviours. It's so very hard when this little life that you adore seems to turn into a dervish for no apparent reason and then, at the end of the day, won't even succumb to a hug or a kiss.

Many people here speak of the grieving type process they go through when their child is DX'd and while I did do that too, there was such relief, thankfulness and illumination when we began to discuss the possibilities. It did not mean that suddenly, a switch was flicked and my son suddenly transmogrified into a model child..... but just the knowledge that there's a reason behind things, that he wasn't ill and that it wasn't my fault made it easier in so many ways. (Is that last one selfish? I can't really decide, mull it over though I might......) I still couldn't leave him, school was a disaster and the wheels turn so slowly that it has taken quite some time for us to reach the point we're at today. But things are better, now, and I am so proud of the effort my son puts into everything, his determination and courage......

I LOVE the fact that my son is not afraid to be different. I LOVE his talented, intelligent, inquisitive nature. He abhors prejudice, cruelty, the loutish stupidity that is all too prevalent in our society today. He has a mad, innovative sense of humour and I love him for all these things and more.

Life's not going to be a cakewalk for him. I still have fears regarding his future,as all the social stuff is still so hard for him. But he's making progress and brings us much joy. My career might have been put on hold, but I've gained so much form life with my lovely boys. And, thinking on it, I've gained much more time at home with my youngest than I would have, had life not been so quirky. We share a marvellous bond (again, I despaired of this in earlier days) and we've all made strides in ourselves. I've learnt a lot about myself, I've made many positive changes in my own behaviour too. If life had not been this way, I would not have met my significant other (hmm....is that a plus, really???..JOKING!!)

I know who my true friends are and I have been shown such acceptance and genuine love from those cherished few that I often feel humbled and blessed.

Don't get me wrong, I'm no living Hallmark card. I still get frustrated, as do my sons. We have good days (you know about those) and then we have bad days too.(and you all know about them, as well!)

Life can be hard, exhausting, turbulent and sometimes downright faecal, but there are also days that leave you with glorious swathes of rosy memories.

I wouldn't change my boy for the world and am glad I got to be his Mum. If I can do for him what my folks did for me, I'll be a happy lady!

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It is great to hear that over time things got , can i say better? or more easier to manage? through out the 5 and half yrs of suspecting dd having something a miss it has changed too, we was extremely close til she was 4 i enjoyed art and crafts with her and would always find something new for us to do i went out to the beach loaded up with paint and brushes even a pot of water and we sat painting stones, i had come through a very difficult time struggling with her as well as my own life situation ,

there was never a real love bond between us, i felt it was due to her being in special care for 7 wks then i was just handed a baby which did make it feel like my job, but due to the way she was it wasnt possible to bond with her so as i would with any child i have cared for in the past i got on with it focused on her days filling them with fun and learning , but the feelings of loss that i didnt feel like her mum was hard, that everything i did for her and i got nothing back, i recently watched videos of her from the time i started to notice and i see it clearer now, she had a distant look about her , yet my ds well we cuddle he'll come put his arm around my neck if i sit on the floor there is a real closeness.

 

i totally get what you say about the disapline side, ds does get told off as he has just discovered things like climbing the tumble dryer, but dd she needs constant watching when out and roads although mostly ok she can flit off in her mind like trying to catch sparkly bit of rubbish right in the middle of the rd, but there is a constance of explaining why not to do these things over and over.

 

In general she has a good behaviour if we removed her aspergic etc tendencies she'd be amazing just these creep in and i dont know if anyone else been through this but i noticed my friend is the same with her dd, we went out shopping and took our ds's hers is 7, he was in the back and would occasionally chat, in the supermarket he was great but did wander off a bit not listen a few times guess like kids do, and i said i hate going out for long drives or days out with dd as she can constantly talk and go on over and over the same thing and it drains me and stresses me, because i expect it know anything can happen while i am out that it may be successful or ruined by her mode she is in, but its like i'm on guard al the time, when i had to arrange my husbands funeral it ment staying away in b and b there was no way i could of done this with dd now or ever but did with ds and enjoyed it,

 

since being told what she has, although now no one can say shes just shy and i know i'm not crazy or incapable of coping, still her dad and grand parents dont except it.

 

 

i just recent filled out dla form, and WOW 3 hours later what a nightmare that was, i asked my friend who knows dd well and witness alot of her behaviour and here's me moan via tx in the eve's , to do the question; statement from someone who knows her, I told him it needs to be about the way she is difficult and lower than her peers that through out the day and night i have to put lots into place to ensure she is happy safe and comfortable cos one thing out and well think we all know that can throw them into turmoil , so bless my friend sat and wrote out a long page but as i read it there was at least 4 things just stating she was good at things ( high function side) i had told him not to feel guilty he wasnt slaggin her off it was not about her abilities it took 4 attemps to dampen those down to him just explaining the moments we have and what i have to do. this i find comes from everyone, only my friend with her dd on the spectrum really gets it,

 

dd 's dad will see her once a fortnight over night up his mum's as he cant cope with being soley responsible at has taken me a yr to get him to do this much he can not cope with her, his excuse is he works and is tired by her consistant talking and playing, ummmmmmmmmmm 24 7 mean anything,

when my husband died no one took dd i was still doing school run hours after i'd been told by the police, my dd had to listen to sometimes 6 hours of calls a day sorting out the other children attending to there needs and dealing with police and husbands paper work etc not one person had her for even a night not realising how it would effect her, although the emotion an empathy wasnt there she went through alot aswell, y can they not see it, her dad even got nasty via txt saying i was incapable of being normal when al i was doing was trying to get him to help as i was really struggling to cope as dd was going through mutism and out burst and well full onset of every thing,

 

its so hard to explain wht things she can do as they just sound like anyother child its just when you put all her daily things in one conversation and repeat it for each day they might feel for you! i guess thats my angst is how everyone brushes it off as not being a big deal, cos kids will be kids, but what do they know?

 

i cant seem to move forward in my mind as i do worry about her future, and trying to cope with all the hurdles we'll face, knowing everything will take longer for her to be able to do like going out with friends walking to school, i know i was 8yr old living up london and walked everyday alone, went out to play alone, but yest she decided to go across the side rd alone with out even looking but her reply to me telling her how wrong it was to do it, was that ' its ok there never any cars, which isnt true and with cars becoming quieter she'd not thought actually its a rd she was in her own world , do you know when they are ready to go out alone, what provisions are made? she'd not be able to ask anyone for help if needed, shops and being out causes her anxiety, often have to leave shops as she has tummy ache, i guess no one knows what tomor holds , i've learnt that one!

 

It's her first sleep over tonight at a friends so will be interesting to see how she copes, or how it effects her once home as being up nan's house can cause problems, as she has no limit understanding will keep going and going , ( same with food can eat and eat) i get her home in agony foot leg ache sore skin cos they allowed her to stay in pool for 2 hours and eczema flared up big time , nan was allowed and hour for lunch but made to take her to the park the whole day in blistering heat no sun cream ............

 

its difficult and i cant see an end in site cant see her dad ever helping, but i will make sure she gets the best i can give so her future is as good as it can.

 

 

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your doing your best you're husband and family proud you doing all you can! don't put so much pressure on yourself you been through alot lately you entitled feel drained ! have you thought getting help and support like respite??? take things at your pace don't rush take it steady i'm not surprised you tired! you're amazingly strong that probably where your daughter gets courage and bravery from takes alot of guts to carry on and do what you're doing! has you and your daughter had beaverment counselling over your husband's death? do you feel benefit you both help cope more through grief stages?do you feel your daughter anxiety got worse since the death? have you been assessed for depression?

 

this web link may help you both :

 

http://www.crusebereavementcare.org.uk/

 

take care

good luck with everything

 

XKLX

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Wow thanks wasnt expecting any reply like that one! um well to be honest i wasnt allowed to greive cos the children and no one helped out, it was get up get on, a few months later i was grief counselling my dd nan over her rabbit that died, she had a month in bed crying and we didnt see her as she was too upset, :tearful: i found myself non stop busy as i had dd and ds to manage usual house shopping etc then there was the 4 other children, calls from parents in laws, could i have 15 yr old as he was suffering and messing up at school, could i have eldest (17 and pregnant) come stay as her partner had gone missing police and al very bad situation could been out come, plus the trips down to devon 3 hour round trip, or over night in b n b to well basicially sign the form for the funeral , (got left with sorting out paying for it) then my only days out just for me to see my friend was thwart with dd nan's moaning she couldnt possible pick her up from school giver her dinner and get her to girls brigade by 6 and home by 7.15, while i was up 7 2 kids ready drop dd school drive for an hour take my friend shopping ( she has phobia's cant get out ) whilst trying to shop keep eye on her and ds i'm on the phone the entire time to step sons school and granpa trying to sort a whole big mess out making appoints to see yr head, then take friend home coffee sort ds out drive home in time for school have to pull over to make more calls and take them, get home unpack shopping cook and feed kids get dd to girls brigade! at 6, but no one saw what i had to cope with ! then came alot of things where i felt just used and like i was only good for helping them as in feb i finally hit rock bottom, an old friend from school came into my life declared his love for me for over 14 yrs but was soon gone due to his own messy life, i was gonna pack up and go just me and ds, but stomache bug put pay to that, so i just got up got on as i always do and when i explained to in laws i'm not talked for a wk as i was finding it hard they ignored me for 2 months til they wanted something ( laptop fixing), may was the court case for the man who killed my husband, the woman ,my husband was sleeping with , the man was her ex husband, she was sat in court with us and they al was chatty to her and well i guess no one ever gives me credit, my husbands ex wife who walked out on him and kids although we were friendly, she was behaving like his wife, when it happened first thing she did i mean in 2 days she was down council insisting she needed a house near to kids yet she neva does a thing, then tried for there child ben, and then expected criminal compensation! need i say more! when the benifits agency said they wouldnt pay for the funeral ( was agreed i'd try if not father in law who works still would pay) i called to let them know al i got was oh you best see c.a.b in other words tough £2.664 bill 2 kids on berevament benefit £80 a month, luckily it was paid by compensation board but they didnt care, now its headstone time they know what they want but need me to say ok what choice do i have! thay also put up a memory site of husband didnt tell me i found out via someone else , al the pic's up there and not one of me and him but several of his ex wife and some even from our wedding, i have done nothing wrong my husband was having the affair, i have helped out no end and yet i get this!

wow sorry for that vent but know one gets it, one afternoon dd nan called and did ask if i was ok in general but she got it all, i had been having very bad time with dd moments as i call them where everyday between school and home which is 6 min walk i'd just given up wanted to scream if she wasnt all the way home for no reason and i'd need to send her to her room, the mutism came in big time alot together over 3 wks so i wasnt to happy, so i said no i feel like cr*p bless her reply, why has old things come back!!!!!!!!!! did they ever go! no one has helped me with 1 thing but you know something i can do it as i have to .

 

i tried calling cruse but sorry to say sounded like all elderly people sat with their knitting and porrige and didnt feel comfy, i got sick of people listen to me saying how bad things were only to say your coping so well, did they know was they here no cos no one was just me and kids,

 

the only me time i got was in the car driving from friends house and that was the only time i could cry, (not good to cry and drive) now i have a ahuge photo of him on my wall and this helps, my ds keeps me going and looking after my husbands birds, i can cry or get upset over silly things like a tin opener dont ask sounds mad but memories every where,

 

I do wander why me, why do i struggle but i do cope i do get through someone said i'm like a duck on the surface i look ok but underneath my legs going nine to a dozen,

my ds has nursery funding 2 morn a wk, but i need that time as for some crazy reason i thought be good to start my studies with open uni for psychology and need to cram 12 hours into 6 a week, my dd would not stay with anyone but her nan or dad, which sometimes is hard to ask them as wk before 15th dec i asked to have dd after school as i was taking friend shopping, nan's reply was oh but i gotta get food and i gotta cook and oh for xmas!!!!!!!!!! does anyone here cook 10days before the day ???? once her excuse was she needed to do house work as had a guest in 3 wks time, so alway fighting up hill struggle on that one,

 

i have excepted that its just me and the kids now and to apprieciate what bit of help i do get and mange things around the rest, just there no real let up friends and people saying lets go out do this or that and i get tired of even that i just feel everyone on my back and although they know about dd they dont get going out has to be managed for her as much as my ds , if he sleeps after 2 he's up til 11pm so no me time!

despite my rant and sounding all negative to others around me , i know i go through stages where i cant be bothered like now my house phone has been unplugged for a wk, not that anyone calls but at least i feel its my choice, but next week i'll be back to rushing about finding things to keep mind going, its all we can do get up get on is my fav saying at the moment.

 

but thankyou smiley for your post :D

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pre-diagnosis - Erratic child, with behavioural problems. Impeccable behaviour with grandparents or old people in general but could not mix with own age and caused problems for parents. Jealous of sister and prone to kicking, hitting, throwing things. Completely fascinated by trains, planes and cars. Liked playing games on my own. Made dens for myself.

 

diagnosis - didn't affect me straight away but initially hit me like a brick wall. I became afraid of my AS and my behaviour became worse as secondary school progressed (aided by severe bullying). Was still in my own world of transportation which was a haven compared to school. I was academically bright but this was gradually eroded as the school years progressed.

 

post-diagnosis 5-6 years after diagnosis, along with having support in lessons, psychiatrist meetings in Nottingham, speech therapy and regular reviews I was building in confidence to tackle bullying and reduce the obsessions that brought it on to me. Move to a new sixth form boosted social confidence tremendously as nobody knew of my past and AS turned from an item of fear to an item of proudness. Started to become more open about my AS. Academic skills started to improve again along with effort and concentration.

 

....Now just finished 2nd year of University, on a 2:1 :) and enjoying the best degree that stems from an AS obsession into buildings and cities! AS has become secondary to my life now and not a cloud hanging over me. I am adamant that it brings uniqueness and I admire most of the things it brings to differentiate me in the present to others around me. Only thing I don't miss is the negative behavioural side.

 

It allows me to work in a very ordered structural way at work but the social skills developed circa 2002-05 have ensured I am aware this is not the best approach in social situations. Its great thinking in detail when it matters.

Edited by CEJesson

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have you thought about respite care for bit give you some personal breathing space or thinking time to grieve process over your husband's death? have u ever contacted NAS explained your personal situation as sounds like you could do with help and support balancing things? or social worker just someone come in and take pressure for abit? as you need break too! seems like always look after others in need in crisis in some ways you that person too! you need save yourself! what bit of help do you get and from where? is anyway you could go to docs and asked to be referred to professionals that could help your family unit in different ways different needs there!? no harm in asking you can't do this alone you end up snapping ,breaking down and not being able to function to the best you can you 'burn out' mentally/emotionally may already reached that stage sounds like it! your family sinking in emergency family crisis! i think anyone would be struggling to do everything keep everything going i know had kids to think about in this! how long can this continue to be this way for? how long can you cope 'juggling' this alone? with nothing? it's not fair or right! you may feel like getting on is 'cover up' line you throw to try cover up all feelings/emotions of difficult fights of reality /experience you going through like protection mask to hide it away from others prying eyes judging you! has DS had no help and support over mutism/ASD at all? sounds like run out of energy stream? motavation in life? after what you've been through to manage to pick up carry on and be strong is inspiritational amazing quality/skill to have! you blow me away with how you do it day to day i know i couldn't i'd blow a fuse literally! i know from what you said feel helpless with DS i know your kids are your world your everything to you and fight back because of them keep battling through lifes stuff that throws at along the way you tough .... can you not about family support worker? someone somewhere must know how and what to help you and your family out! the way you've all coped got on is wow to outsiders not facing this! you had it hard! sounds like DS nan selfish and unhelpful part and role to play helping you out in this dreadful situations! when you need family support and guidance the most you must feel so lost confused frustrated angry upset bitter ....etc unpluggin house phone sounds like good breathing space time out thing to do sensible tip! good on you you need time with you and your kids to process everythings that happened to you all! you don't need to speak to anyone outside your unit that's you right ,your choice! i totally agree with that decision! sounds like this ex wife of husband trying to resurface trying to see what she can get financially out of his death bet that makes you feel angry,bitter towards her!? does anything help with DS sleep pattern? i know commnly kids/adults with ASD find very hard task to switch busy parts brain off shut down to go off to sleep!? have talked to doc over that? what could be done to help? maybe meds? therapies etc shcoll saying to send her to room very harsh not understanding frustrating annoying judgemental stereotypical views! -unhelpful ,negative

 

why don't make memory book in husbands memory of pics etc maybe with your kids? if feel up to it right now don't have to just an idea had may help grieving process happen for everyone?!

 

grieve can make upset cry over littlest things that seem stupid and silly but way letting it out too don't forget that!

i can you imagine getting tired over family,friends say do this do that isn't helping you in situations either!

 

it's not negatove rant it real true facts to your life personal experiences etc you at least deserve time etc to vent emotions thoughts feelings you may have inside allow yourself this please!

 

when someone dies part of losing them realising reality of that memories everywhere hard to accept but part of process too!

 

sorry you had go through so much stuff on your own without help and support the family needs you done birlliant job and should be pleased too! your husband would be im sure of that and your kids are grateful for strong mummy to help them cope carry on with life and not feel bad wrong silly etc it normal!

 

take care

XKX

 

 

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